Chronic pain patients: Don't take away our opioids

The "Don't Punish Pain" rally drew about 40 people to the Oregon State Capitol on Saturday, part of a nationwide series of protests.

ANNA REED / Statesman Journal

Eve Blackburn has a rare spinal cord disease that leaves her in constant pain, comparable to that of advanced cancers. She uses opioids to help manage that pain. But she said her dosage of those crucial medications has been reduced by 60 percent in the past 14 months, and she's been told it will fall even further.

Karen Begeal has had chronic pain much of her life, ever since a second back surgery at 35 years old. She said her opioid medication is what allows her to have a quality of life at all. As it is, a good day consists of her being able to get up and do simple chores, such as unloading the dishwasher.

Eve Blackburn, 55, of Corvallis, speaks during a protest of restrictive laws on opioids that ...more

Eve Blackburn, 55, of Corvallis, speaks during a protest of restrictive laws on opioids that patients say hurt the people who rely the drugs to live with less pain at the Oregon State Capitol in Salem on Saturday, April 7, 2018.

ANNA REED / Statesman Journal

Wendy Sinclair's spine was shattered three years ago in a car crash. She's used opioids to control the pain and is on a relatively low dose, but she said she has faced suspicion from pharmacists and friends as well as ultimatums from doctors to reduce her prescription level.

"There are ways to help with addictions, but none of them include punishing the wrong people," Sinclair said. "It simply doesn't fix the problem and only creates injustice, suffering, loss of quality of life and an increase in people unable to care for themselves or function."

Blackburn, Begeal and Sinclair all spoke Saturday as part of a national "Don't Punish Pain" rally to raise awareness of how strictures placed on opioid prescribing harm the people who need that medication to function.

The chronic pain patients outside the Capitol building said they are being lumped in with addicts who abuse the same powerful drugs. But they said dependency and addiction are not the same.

"I don't want to delegitimize the opiate overdose epidemic," Blackburn said. "Addiction needs to be treated just like our pain needs to be treated, and the hysteria over this crisis has overflown onto some of the most vulnerable in our society."

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They and other speakers pointed to the opioid prescribing guidelines created by the Centers for Disease Control and Prevention in March 2016 as the origin of the emphasis on medicinal reductions. They said their doctors became less willing (or able) to prescribe opioids and more interested in transitioning them away from those medications. That's what the CDC recommends with prescriptions above a certain level.

States have begun legislating limits on how many opioids can be prescribed at one time. Many other states, including Oregon, have adopted their own prescribing guidelines based on the CDC recommendations.

"I would like to see these lawmakers spend one day with a person with chronic pain," Begeal said.

Dr. Amy Kerfoot cautioned that pain is complicated, and so are the ways that it can be treated. Just because a patient thinks their pain is being properly managed doesn't necessarily mean their doctor agrees, she said.

Kerfoot is an occupational medicine physician for Northwest Permanente and a member of opioid task forces established by Gov. Kate Brown and the Oregon Medical Association.

She said that doctors were over-prescribing opioids for a long time, and the limitations suggested by the CDC are a rational response.

“Opioids are only one way (to treat pain), and they are not necessarily the safest or the best way,” Kerfoot said.

Joseph Gramer, 60, of Salem, carries a sign during a protest of restrictive laws on opioids that ...more

Joseph Gramer, 60, of Salem, carries a sign during a protest of restrictive laws on opioids that patients say hurt the people who rely the drugs to live with less pain at the Oregon State Capitol in Salem on Saturday, April 7, 2018.

ANNA REED / Statesman Journal

Among the CDC's guidelines is a recommendation that patients with a prescription higher than 90 morphine milligram equivalents per day be tapered to a lower dose or discontinued from opioids.

Chronic pain patients say this guideline is treated by some doctors as law and tapering is sometimes the first discussion a new physician will have with a patient.

The CDC justified the need for prescribing guidelines in part because of the years-long trend of increasing opioid overdose deaths, which rose to 42,249 in 2016. Prescription opioids were responsible for 32,445 of those deaths, according to the CDC's analysis.

But, in an article for the April edition of the American Journal of Public Health, four CDC researchers suggested that number may be "significantly inflated."

In its original analysis, the CDC considered "prescription opioids" to include natural and semi-synthetic opioids, synthetic opioids and methadone. The researchers wrote that the dramatic rise of illicitly manufactured fentanyl — which is considered a synthetic opioid — and the failure to differentiate that from prescribed fentanyl could have undermined the agency's conclusions.

Using a more conservative approach that attempts to remove illicit fentanyl from the final tally, the researchers concluded that 17,087 prescription opioid-involved deaths might be a more accurate figure.

But they wrote that this number may still be inaccurate because of polydrug use and the lack of specific drug identification in 20 percent of death certificates.

“Obtaining an accurate count of the true burden and differentiating between prescription and illicit opioid-involved deaths are essential to implement and evaluate public health and public safety efforts,” the researchers wrote. "Decreases in prescription opioid–involved deaths could be masked by increases in IMF deaths, resulting in inaccurate conclusions."

Contact the reporter at cradnovich@statesmanjournal.com or 503-399-6864, or follow him on Twitter at @CDRadnovich